FAMILIES FOR FRAGILE X, INC.
MIAMI, FLORIDA

Families for Fragile X is a 501(c)(3) non-profit organization, established by families and friends all affected by Fragile X Syndrome. Although parents of special needs children have loved ones to support them, it can seem that no one really understands the physical, emotional, and spiritual challenges that face them. Rather often, the phrase "until you've walked a mile in these shoes" replays in the minds of parents of a special needs child. Families for Fragile X allows parents to have others to identify with that are going through the same struggles, headaches, and heartaches that come with having a child affected with Fragile X Syndrome. No parent should have to go through this journey alone. Families for Fragile X is devoted to bringing the Fragile X community in South Florida, and the rest of Florida closer together. Also, the foundation is committed to raising funds for research and spreading awareness about Fragile X Syndrome to the communities in Florida. Thank you for visiting. If you have any suggestions, recommendations, or feedback on how we can help you, please feel free to contact us directly at (305) 992-4430 or The short answer is that Fragile X syndrome (also called Fragile X) is the most common inherited form of mental impairment. It is caused when a mutation in a gene prevents the body from making an important protein. This impairment can range from learning disabilities to more severe cognitive or intellectual disabilities. FXS is the most common known cause of autism or "autistic-like" behaviors. Symptoms also can include characteristic physical and behavioral features and delays in speech and language development. The syndrome affects approximately one in 3,600 males and one in 8,000 females. It results from a change, or mutation, in a single gene, which can be passed from one generation to the next. Fragile X appears in families of every ethnic group and income level. Genes provide blueprints for the body, giving instructions on how to build each part of a cell. In people with Fragile X, sections of a blueprint become repeated to the point that the instructions don't make sense anymore. Genes provide blueprints for the body, giving instructions on how to build each part of a cell. In people with Fragile X, sections of a blueprint become repeated to the point that the instructions don't make sense anymore. The mutation is in the DNA of the X chromosome. The gene appears in three forms that are defined by the number of repeats of a pattern of DNA called CGG repeats Greater than 200 repeats have a full mutation which causes fragile X syndrome. When that happens, the cell can no longer decipher the instructions from the brain. With no instructions to follow, the final product, a protein called FMRP, cannot be made. There is currently no cure as such for Fragile X, but once it has been diagnosed there are a number of management strategies that can help many children and adults. Currently there is no cure for Fragile X. However, there are a variety of ways to help minimize the symptoms of the condition. Children with Fragile X who receive appropriate education, behavioral or physical therapy, and medication have the best chance of using their individual capabilities and skills. Even those with significant mental impairment can learn to master many self-help skills. One important factor in developing a child's long-term potential is early intervention. The sooner a child begins to get help, the more opportunity for learning. Because a young child's brain is still forming, early intervention gives children the best start possible and the best chance of developing their full potential. Even so, no matter when a person is diagnosed with Fragile X, it's never too late to benefit from treatment. Most children with Fragile X, including those with severe mental retardation, are guaranteed free, appropriate public education under federal law. Public Law 105-17: The Individuals with Disabilities Education Act—IDEA (1997) makes it possible for children with disabilities to get free educational services and educational devices to help them learn as much as they can. Each child is entitled to these services from age three through high school, or until age 21, whichever comes first. Also, every state operates an early intervention program for children from birth to age three; children with Fragile X should qualify for these services. The law also states that children must be taught in the least restrictive environment, appropriate for that individual child. This statement does not mean that each child will be placed in a regular classroom, but instead, that the best combination of one-to-one tutoring, small group work, and regular classroom work will be arranged. If a child qualifies for special services, a team of people, including the child's parents or caregivers, teachers, school psychologist, and other child development specialists, will work together to design an Individualized Education Plan (IEP) for the child. The IEP includes specific learning goals for that child, based on his or her needs and capabilities. The team also decides how best to carry out the IEP, such as making choices about classroom placement for the child, determining any devices or special assistance the child needs, and identifying the developmental specialists who will work with the child. A child with Fragile X should be evaluated and re¬evaluated on a regular basis by his or her special services team. In this way, the team can determine how the child is doing and whether any changes are needed in his or her treatment (for instance, changes to the IEP, changes in classroom placement, or changes in other services) to ensure the child is getting the best possible care. Speech-language therapists can help people with Fragile X to improve their pronunciation of words and sentences, slow down speech, and use language more effectively. The goals of a speech therapist for a child with fragile X should be to facilitate social play and create consistent patterns of nonverbal communications. They should establish basic imitation and imitation of sounds and words. Other goals should be to increase communicative attempts (with or without prompting) and increase turn-taking reciprocity.